April 6, 2008

Reading about Charlton Heston this morning, I started thinking about what I would do if I learned I had Alzheimer's disease. One thing is, I would keep blogging. That got me wondering how many people are already blogging with Alzheimer's disease, and how people with Alzheimer's disease are using blogging. Here's an article from Wired in 2002 about blogging with "AD."

"Many people, once they're diagnosed with AD, simply give up on life," said Alice Young, a 75-year-old former psychotherapist who divides her time each year between Florida and Minnesota. "And those are the people who go down more quickly."

But Young and others with AD are blogging to keep their spirits high and their minds sharp.

In her journal, Young mixes frank descriptions of her illness with encouraging words and prayers.

"Concentration is coming harder now," reads one entry from November 2000. "I am constantly misplacing/losing things. I go to the Dr. and I am going to ask for another test to see how much I have lost."

More than one and a half years later, on June 17, 2002, Young has become more philosophical about her AD: "Time is getting shorter for me, and I realize it, so I'm 'going for the gusto' as much as I can," she wrote.

Young said she and others with AD keep journals to "exercise the cognitive powers we have as much as possible."

"But I also think it's important to be realistic about AD," Young said.

AD has no known cure, and there is no proof that blogging, or any other form of cognitive exercise, can stem its progress. But AD bloggers say their journals have greatly improved their quality of life, by helping them to recall tasks completed and milestones passed.

I had the weirdest off-the-wall dream this morning about aging women and keeping alive the things in life that have meaning. I didn't know any of the characters in it and at the end, a new set of characters was completely in tears. I woke up suddenly, thinking, "WTF?"

Years ago a 30yo co-worker remarked that as you grow old you start losing your mind, but also you start not caring.

Dogs are good for Alzheimer's. Of course dogs are good for everything.

YouTube I stumbled into just the other day, here, idly googling whether there was easy support for my claim that pit bulls are used as therapy dogs. I don't know if the guy is losing his mind, but he seems happy enough.

Nowadays the pit bull owners are above all too defensive, but they feel it's necessary, I guess. They don't realize that you can't defeat newspaper narratives ; or maybe they sort of do but are trying anyway.

"you could look back into your archive and witness the slope of your own decline. Is that something you would want to do? I would."

If you were looking back at your posts with a mind wracked by AD, would you be able to detect the decline? Or maybe you just would not be able to comprehend earlier posts and you would think, "Wow, I used to babble a lot of nonsense--maybe my mind is actually improving".

To an extent, this is a load of crap. People like explanations for things and constantly make causative connections that simply don't exist. It is perfectly understandable that someone suffering from a illness will latch on to whatever they think is helping them.

Having said that, people can completely give up. One of my grandmothers did as soon as her husband died. On the other hand, one of my wife's grandmothers was a crabby, bitchy woman who kept on going.

The assumption in this post is that misplacing things and having a harder time concentrating are precursors of Alzheimer's. But don't many people as they age lose things more frequently, walk into a room and forget what it was they walked into the room for, have to rely more on a list rather than holding all the things they have to do on a given day in their heads? And most of those people don't get AD. Or, at least, they die of other causes first. So, the question is: does memory loss ipso facto lead eventually and inevitably to AD? Or not?

Fascinating post, particularly since I just reread Flowers for Algernon yesterday.

I would imagine the decline of a person blogging with AD would be much more rambling. A short story has to be written concisely. What would be interesting is not merely the mental decline, the forgetfulness, the lack of focus, the decreasing complexity and insight of the ideas, although all this would certainly happen. But would be most interesting would be the emotional journal. My grandfather became a very angry man in the early stages and somewhat depressed in the middle ones.

``Consign them here, but why I wonder, confide to the bottom of this book what were my mother's last more or less intelligible sentences, still alive at the moment I am writing this, but already incapable of memory, in any case of the memory of my name, a name become for her at the very least unpronounceable, and I am writing here at the moment when my mother no longer recognizes me, and at which, still capable of speaking or articulating, a little, she no longer calls me and for her and therefore for the rest of her life I no longer have a name, that's what's happening, and when she nonetheless seems to reply to me, she is presumably replying to someone who happens to be me without her knowing it, if knowing means anything here, therefore without my knowing henceforth any more clearly myself who will have asked her such and such a question like the other day in Nice when I asked her if she was in pain (``yes'') then where, it was February 5, 1989, she had, in a rhetoric that could never have been hers, the audacity of this stroke about which she will, alas, never know anything, no doubt knew nothing, and which piercing the night replies to my question : ``I have pain in my mother,'' as though she were speaking for me, both in my direction and in my place, although in the apparently amnesiac confusion in which she is ending her days the memory of her mother is very present to her, and although she looks more and more like her, I mean like my grandmother, a woman just as attentive to her appearance, her clothing, her makeup and her manners, then the evening of the same day, when she was alone with me in that house and I was in a different room, she had several times successively exposed herself naked in her bed, then as soon as I asked her why she replied to me, in just as improbable a way for anyone who had known her : ``Because I'm attractive,'' and because she no longer articulates very clearly, her refusal to keep false teeth in not helping matters, I wondered if I had heard aright, had she said ``Because I'm attractive,'' had she really, however true it might be, spoken such an improbable sentence, but instead of pursuing this story, I stop for a moment over this word ``improbable'' and over a pang of remorse, in any case over the admission I owe the reader, in truth that I owe my mother herself for the reader will have understood that I am writing for my mother,perhaps even for a dead woman and so many ancient or recent analogies will come to the reader's mind even if no, they don't hold, those analogies, none of them, for if I were writing here for my mother, it would be for a living mother who does not recognize her son, and I am paraphrasing here for whoever no longer recognizes me, unless it be so that one should no longer recognize me, another way of saying, another version, so that people think they finally recognize me, but what credulity, for here's the basis of the improbable, improbable is here below the name.''